Two weeks ago, I stumbled upon various news pieces discussing the toll the pandemic has taken on mothers. Articles like “How Society Has Turned Its Back on Mothers” in The New York Times, with the eye-opening subheading, “This isn’t just about burnout, it’s about betrayal,” caught my attention. New York Magazine also featured “All Work No Pay,” and The Daily Skimm dedicated a section of their newsletter to the topic called “Mother Load.” As I browsed through these headlines, I couldn’t help but reflect that for parents of medically complex children, particularly mothers, this struggle is a reality we’ve been living for years.
Just over a year ago, I penned a blog post about the uncertainty that comes with the pandemic, a feeling that isn’t unfamiliar to those of us raising medically complex children. After experiencing a year of upheaval, I believe many have caught a glimpse of the challenges we face daily. It made me wonder if this shared experience could foster a greater understanding of what life is truly like for caregivers of medically complex children.
Historically, children with conditions similar to those of my daughter, Mia, would have been placed in institutions before the late 1960s. Even after that, there wasn’t much focus on in-home care or community support for families. It wasn’t until the mid to late 1980s that institutions began to close and public funding shifted toward supporting children with significant medical needs.
Mia required constant care, and I used to think that “around-the-clock care” was a universal experience for all parents. However, caring for Mia was unlike caring for a newborn or an elderly person. When she woke up, it wasn’t just for a quick feeding; it involved medication, suctioning, diaper changes, repositioning, and more. Unlike typical caregiving scenarios, we didn’t have nurses or a nursing home to lean on for support. On average, Mia needed six medications two to three times a day, with strict timing that required meticulous planning. I had a designated cabinet in the kitchen for her medications, complete with a daily schedule taped on the inside.
Over time, I became adept at managing her care—taking blood pressure, swapping feeding tube buttons, and even administering shots. I began to speak the medical language fluently, feeling like a self-taught nurse or doctor. Meeting other parents with similar experiences was validating; we shared resources, advice, and often vented about our exhaustion. The hardest part was the lack of external support—there was no end in sight to our relentless responsibilities.
While I am profoundly grateful that Mia was born in 2012 rather than 1912, it’s evident that our society still has a long way to go in supporting families like ours. Though children today are safer and better cared for at home, the pressures on medically complex families remain high.
Parents of medically complex children often wear multiple hats—nurse, physical therapist, nutritionist, and more—without any formal training. In this pandemic, all parents have had to step into various roles for their children, and it can easily become overwhelming. I hope that as we emerge from this crisis, the experiences of medically complex families are taken into account when developing solutions to alleviate the burdens we face.
For those who want to explore more about home insemination, check out this insightful blog post. Additionally, if you’re looking for expert resources, I recommend visiting Make a Mom for a comprehensive guide on home insemination kits and March of Dimes for pregnancy resources.
Potential Search Queries:
- Home insemination kit benefits
- How to use a home insemination syringe
- Self insemination success stories
- Artificial insemination options
- Pregnancy tips for new mothers
In summary, while the pandemic has given many a taste of the struggles faced by medically complex families, this experience is a daily reality for those of us navigating these challenges. It’s crucial that we advocate for more support and understanding as we move forward.